About me

PROFILE:

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, October 31, 2014

Did you ever have
a day full of a series of unfortunate events making you wonder if you got out
of the wrong side of bed in the morning? One positive thought in the morning,
can literally change your day. If you think positive, positive things will
happen. It’s the same as smiling at someone, they will inevitably smile back at
you. Unfortunately yawning, is just as contagious, but nowhere near as
attractive as a smile!

People often ask me how I can remain positive and continue to smile despite living with Gaucher and Parkinson’s disease. Having these two diseases is rare, and there are not too many people in the world who have Gaucher and Parkinson’s. After hearing statistics from several different sources, the actual number appears not to be clear, but it’s somewhere between 50 and 100 people. That’s a VERY small number of patients.

A connection
between the two diseases was made some years ago, and research and studies have
been going on ever since. Scientists at The University of California Los Angeles
(UCLA) recently developed a drug for Gaucher, but instead showed promising
results for treatment of Parkinson’s disease. Still in early stages of clinical trials, they have hopes this treatment will have the potential to stop Parkinson’s
disease from progressing.

Thought and planning when building a house or even a public toilet for the disabled is my topic this week in The Huffinton Post.

Friday, October 24, 2014

If I had a penny
for every time someone has given me advice, by now I would be a very wealthy
woman! Often advice comes from people with no medical training or personal
experience with the disease you are suffering from. Although well-meant and
with the best intentions at heart, advice like this drives me crazy. I’m sure I’m
not alone, and many people suffering chronic ill health have to put up with
receiving a gamut of advice, some of which is totally inappropriate and
occasionally just downright dangerous.

Knowing when to
filter out such advice is easy: if they don’t suffer themselves or are a
caregiver of someone with the same disease as yourself, a qualified doctor or recognized
support group / organization specializing in your particular illness – let their
advice go in one ear and out the other. On occasion, to satisfy the person’s intentions
of their goodhearted advice, I check out thoroughly, researching with the help
of the Internet and sometimes conferring with a specialist in Gaucher or
Parkinson’s. Some of the advice or suggestions that have been made to me over
the years have been amazing (and I don’t mean in a good way!)

However I would
like to mention that sending a link to a newspaper article that is pertinent to
someone’s disease, with information of new discoveries, medical trials or
findings, is welcomed and received in a positive light, giving a feeling of
hope.

A healthy person
cannot imagine what it is like to literally battle each day against the
symptoms of chronic disease, and in my case I’m battling two diseases. I
sometimes feel a little outnumbered, but like David and Goliath, we all know
who wins!

So
should you be guilty of giving unverified advice about an illness you know
little or nothing about …..please think carefully before you speak!

We are nearing the end of Gaucher Awareness Month, but being
aware should be continual and not restricted to merely one month a year. I have
written about how traditional medicine and alternative medicine can work side
by side and invite you to take a look at my article this week in The Huffington Post.

Friday, October 17, 2014

Sometimes it’s
difficult for my husband to get a word in edge-ways. I always insist that being
a chatterbox is inherited, and therefore can’t help it (well that’s my excuse
and I’m sticking to it!) I thought I’d give my husband a chance to have his say
today, so I will now hand over the keyboard to my better half:

OK
October has arrived, so that means its Gaucher Awareness Month. Personally I
became aware of Gaucher many years ago, when Elaine and I were dating and getting
serious, she said to me one day “I’ve got Gaucher disease”. At that point I
think I became wary, but after listening to Elaine’s explanation, I asked a
friend of mine who is a doctor and I decided to read up on what it meant to
live with Gaucher and what if any implications it would have on our future
relationship. Well the more I found out the more I realized there was nothing so
scary being “wary” and informed became “being aware”.

Becoming
aware of a new subject is simply learning about something that previously was
unknown. So let’s do everything we can during October to educate people so they
understand what Gaucher disease is and how it manifests itself in different
people. Gaucher disease is not something to be afraid of; the more aware people
are, the more questions and research will be done to help sufferers. Thanks,
let’s spread the word……

Did Napoleon say: “Not tonight Josephine”, or
was it a Gaucher or Parkinson’s patient? Take a look at my article in The Huffington Post if you're not sure!

Friday, October 3, 2014

October is Gaucher Awareness month and support
groups are holding events and creating awareness in many novel and different
ways around the world. Educating the general public about rare diseases is
never an easy task.

Gaucher disease is just one in
approximately 7,000 diseases considered to be rare. There are roughly 350
million people effected worldwide from rare diseases, which is more than Aids
and Cancer patients combined. This means that the rare disease community is far
larger than the general public realise. So maybe rare diseases are not so
unusual and more common than we think!

It is far from easy reaching a
correct diagnosis when a rare disease is concerned. The patient and family not
only suffer great frustration through this long process, but there is also the
economic impact on health funds and personal financial hardships that incorrect
diagnosis, along with years of tests and seeing different specialists entail.
Often children and adults can suffer ridicule, as if they are hypochondriacs
seeking attention, when test after test rules out the common and most likely causes.
Only when finally someone is diagnosed with a rare disease, as if solving the
last piece of a puzzle, one can see the full picture. Great relief is found by
patient, family and treating doctor, now understanding the symptoms and
suffering, there is a feeling of being at long last, understood and acknowledged.
Arriving at this point, for some, sadly can take years.

How times have changed since I was
diagnosed with Gaucher in 1968 at the age of 5 years old. I was fortunate
to be diagnosed quickly only due to having older siblings who were
diagnosed first. Gaucher, being a genetic disease, once my brothers were
diagnosed, it was fairly obvious in my case, what to test for. Back then there
was so little information, no treatment available and patients suffered greatly
in the hands of doctors who simply didn’t know about this rare disease. Today
thankfully, things are very different, and I’m often pleasantly surprised to
hear a doctor I’ve not met before tell me he/she knows about Gaucher. Rare, medium or well done? As it's October, I would have to say RARE! Take a look at my article in The Huffington Post.